Fabry disease

To help inform and inspire, we are initiating a new video series called Advocate to Advocate. We will be regularly featuring brief video interviews with patient organization leaders around the word. Our goal is to share stories of how advocates star...

We are delighted to highlight a PAL Award project of the Fabry Support and Information Group in the U.S. as part of Fabry Awareness month.
The project, called "LSDs Revealed: Understanding the Basis of Lysosomal Storage Disease" utilizes video as an...

“When we joined the board of the Fabry Support and Information Group – Netherlands (FSIGN) patient organization ten years ago, we quickly discovered what apparently many women in the Fabry community already know,” said Erica Schenk, Director a...

We continue to promote Fabry awareness, even though the “official” Fabry awareness month of April has passed. As part of that, we wanted to highlight a new and moving video about Fabry disease.
Facing challenges in life can be daunting, but to...

In honor of Fabry Awareness Month, Kathleen Coolidge highlights a unique initiative by the Fabry Support & Information Group (FSIG) in Missouri. A big "thank you" goes to Jack Johnson, FSIG's Executive Director, for sharing this with our Rare Co...

PAL Award recipient FSIGN (the Dutch Fabry Support Group) recently declared the first Saturday in April as the annual International Fabry Women’s Day. The goals of the day are to increase recognition and support for all women with Fabry Disease an...

Meet Jerry Walter, Founder and President of the National Fabry Disease Foundation. Jerry is also a retired U.S. Army Colonel. He has been an active and committed leader of one of the 2 US Fabry patient organizations, dedicating his energy, skills an...